The Myositis Association of America (MAA) was created by Betty Curry in March, 1993, as the Inclusion Body Myositis Association (IBMA), a nonprofit corporation. The National Organization of Rare Disorders (NORD) provided the names of 16 patients who became the initial members.
Extensive outreach through the medical community and later through the Internet touched off enormous growth. As of January 1, 2003, the name changed to The Myositis Association (TMA) to include the growing membership on every continent. The list of 16 patients has grown to 6,000.
Since then, scientists, practicing physicians and other medical professionals have supported the organization through the Medical Advisory Board. This group provides medical information to staff and patients and guides the TMA research program. The first conference was held in 1995 and is now an annual event with a panel of medical experts, peer counseling, sessions on coping skills, support group training, and time to meet other patients and their families.
A Board of Directors manages TMA. The staff answers more than 10,000 e-mail messages, phone calls and letters each year, and more than 10,000 newsletters are mailed annually. Growth in revenues has increased dramatically, providing a means for continued service to members and their families.
In 2002, TMA opened a Washington DC office to provide more effective advocacy for its members. TMA’s research program, also begun in 2002, has now funded nearly $6 million in myositis research.